Should You Have Kids If You Carry RP? A Real Look at Genetic Testing, Family Planning, and the Decisions No One Talks About

It's 2 a.m. again. You're lying awake after another appointment where the ophthalmologist said "progressive vision loss" and "no current cure" like they were discussing the weather. If you have RP—retinitis pigmentosa—or carry the gene, you've probably asked yourself the questions that keep surfacing at this hour: Should I have children? Will I pass this on? Am I selfish for wanting a family, or selfish for choosing not to?

These aren't textbook ethics problems. They're the raw, messy stuff of actual lives—argued about in Reddit threads where parents share what genetic testing results really felt like, where adults with RP wrestle with loneliness and what they'll leave behind, and where family members describe what it's actually like growing up with a parent who can't see.

This piece looks at how people in the RP community are really making these decisions right now—not in theory, but in practice.

The RP Family Planning Dilemma: Messier Than the Statistics Suggest

Medical literature loves clean percentages: autosomal dominant, autosomal recessive, X-linked. But lived reality doesn't fit neatly into Punnett squares. It's emotionally heavier, full of situations that make a mockery of simple odds.

Take this parent's story, shared straight from community discussion: "I have 2 kids. Ones 9 and the other is almost 4. My 9 y/o has RP. My 4 y/o does not. I had genetic testing done on both of them to tell me."

This isn't a case study. This is someone who made their choices, had their children, and now lives with the strange asymmetry of one affected child and one unaffected. Their follow-up cuts right through any clinical distance: "Do I regret having kids? No. Am I upset..." They don't finish the sentence. They don't need to.

The RP community is full of these stories. Someone else offers a completely different angle: "My mom has RP. I'm pretty happy to be alive and that she's my mom. Me and my sister don't have it. My kids and my sisters kids don't have it. We each have three kids. All have done..."

Three generations. Six children. Zero transmissions in this branch. The genetic lottery can break well across decades, even when the risk feels crushing in the moment.

Genetic Testing: You Can't Make Real Decisions Without It

Before any family planning conversation can go anywhere useful, you need genetic testing. The community keeps coming back to this—not as bureaucratic hoop-jumping, but as the thing that turns vague dread into actual choices.

"You should get genetic testing and find out what kind of mutation causes your RP," one longtime community member advises. "There is a prenatal test that can detect mutations at 10-13 weeks. Or you could do IVF and have t..."

The details matter enormously. RP isn't one disease—it's a category covering mutations in more than 80 genes. Your specific mutation determines:

• How it passes down: Autosomal dominant RP carries different risks than autosomal recessive or X-linked forms
• How fast it progresses: Some mutations mean earlier onset, faster decline
• What treatments you might access: Gene therapy trials and emerging treatments target specific mutations
• What testing you can do for future children: Prenatal and preimplantation genetic testing both require knowing what mutation you're looking for

Without this foundation, you're planning based on fear instead of facts. Getting comprehensive genetic testing—usually panel testing, whole exome sequencing, or specialized RP gene panels—pays off across every decision that follows.

Three Main Paths: Prenatal Testing, IVF with PGD, and Other Routes

Once you know your specific mutation, three primary options emerge for having biological children with lower transmission risk.

Prenatal Genetic Testing (10-13 Weeks)

Chorionic villus sampling (CVS) or later amniocentesis can detect RP mutations in utero. This keeps natural conception possible but opens difficult ethical territory: you might face decisions about termination based on genetic status.

Some families find value just in knowing—whether to prepare for a child with vision impairment, regardless of what they ultimately decide. Others find this knowledge during pregnancy psychologically unbearable.

IVF with Preimplantation Genetic Diagnosis (PGD)

IVF combined with embryo screening is the most technologically advanced option. Embryos get tested for your specific RP mutation before implantation, letting you select unaffected ones.

It's expensive, physically demanding, and emotionally brutal. You might need multiple cycles. Not all embryos will be mutation-free. The technology improves your odds dramatically, but doesn't guarantee anything.

Still, for those who can access it, PGD changes what's possible: biological children with RP risk reduced to the margins.

Adoption and Non-Biological Family Building

The community keeps bringing this up with genuine respect: "Adoption is also something you can add to that list."

Not as a consolation prize, but as a real, valid path. Several community members note that adoption sidesteps genetic transmission entirely while still building the family you want.

The practical reality involves real barriers: cost, wait times, eligibility requirements that sometimes discriminate against disabled applicants, emotional complexity. But the RP community's framing matters—adoption as empowered choice, not desperate fallback.

Living With the Choices: What Parents Say Years Later

What happens after you decide? The community offers something rare: perspective from years down the road.

The parent with two children—one with RP, one without—shows that outcomes don't determine regret. Their "Do I regret having kids? No" sits right alongside acknowledgment of real upset. Both feelings exist together. Neither erases the other.

Their experience also illuminates sibling dynamics you won't find in clinical papers. A 9-year-old with RP and a 4-year-old without will grow up on completely different tracks. Family resources, attention, emotional energy won't distribute evenly. The unaffected sibling's experience—watching a brother or sister lose vision while keeping their own—creates its own psychological territory.

Meanwhile, the adult child of an RP parent offers generational perspective: "I'm pretty happy to be alive and that she's my mom." This pushes back against the idea that having an affected parent is inherently harmful. Relationship quality, family support, societal accessibility matter more than genetic status alone.

Both perspectives are true. Neither cancels the other. Family planning with RP means holding this complexity without forcing it to resolve too quickly.

The Hope Factor: Medical Progress and Uncertain Timelines

One thing that makes today's RP family planning different from even a decade ago: treatments are developing faster.

"Technology is progressing exponentially every year," notes one community member thinking about retirement decades out. "I am hopeful for a cure so I can have the retirement that I worked decades to earn. My dream was always to get a small RV and g..."

This isn't naive optimism. The FDA has approved multiple RP-related therapies since 2017. Gene therapy for RPE65 mutations (Luxturna) proved the concept works. CRISPR trials are running now. Retinal prosthetics keep improving. Stem cell approaches are moving through clinical phases.

For family planning, this adds time to the equation:

• A child born with RP today may reach adulthood with far more treatment options than exist now
• Your own disease trajectory might change during your child-rearing years
• "Untreatable RP" might become a historical description rather than permanent reality

But hope needs grounding. "Exponential progress" doesn't mean universal cures. Mutation-specific therapies leave many genetic forms waiting. Regulatory timelines, insurance coverage, and global access create unequal distribution of whatever benefits do emerge.

The community member's specific dream—RV travel in retirement—shows how RP shapes planning at every scale. Family decisions, career paths, leisure hopes, legacy questions all filter through progressive vision loss and its possible remediation.

What's Harder to Talk About: Loneliness, Identity, and Finding Your People

Beneath the logistics and medical details lies deeper territory: who you are, where you belong, and the isolation that threads through RP community discussions.

One thread asks directly: "How to get rid of this loneliness." Another shares a "Song I wrote about my experience with RP"—art as processing. The "Quick Rant" thread holds space for unfiltered frustration.

These expressions matter for family planning because they reveal what prospective parents fear passing on: not just a mutation, but a lifetime of navigating social exclusion, limited activities, and building identity around disability.

Yet the community itself offers balance. The very existence of r/RetinitisPigmentosa—thousands of people sharing resources, validating experiences, offering practical help—shows RP doesn't have to mean isolation. The parent asking "Do I regret having kids?" gets support. The adult child of an RP parent affirms their gratitude for existing.

For prospective parents, this suggests: the social dimensions of the condition change with community access, technological accommodation, and cultural attitudes that keep evolving. A child born with RP today enters a world with more resources, representation, and connection than previous generations had.

Practical Questions for Prospective Parents

Drawing from community experiences, here's a framework for organizing your thinking—without pretending there's one right answer.

Getting Clear on Genetics

• Has comprehensive testing identified your specific RP mutation?
• Do you understand your inheritance pattern and transmission probability?
• Have you talked to a genetic counselor who specializes in inherited retinal diseases?

What Technology Can You Access?

• What prenatal or preimplantation genetic testing options exist for your specific mutation?
• Does your insurance cover IVF with PGD? What would you pay out of pocket?
• What's the timeline for these interventions relative to your reproductive window?

What Do You Actually Value?

• How would you respond to prenatal detection of RP?
• Does biological relatedness matter specifically to you?
• How do you weigh quality of life against existence itself?

What Support Do You Have?

• What RP-specific resources exist where you live?
• Can you access low vision rehabilitation services?
• What's your financial capacity for potential future treatments or accommodations?

How Do You Think About Time?

• How likely do you think meaningful therapeutic progress is in the next 20-30 years?
• How does your own RP progression timeline overlap with potential child-rearing years?
• What life goals (career, travel, retirement) compete with or complement building a family?

When Partners See It Differently

Community threads focus more on individual decision-making than partnership dynamics, but this dimension is unavoidable. When one partner carries RP and the other doesn't, or when you disagree on risk tolerance, family planning becomes relationship negotiation.

There's no universal resolution. Some couples split over irreconcilable differences. Others find compromise in adoption, technological intervention, or accepting transmission risk. The community's emphasis on multiple valid paths—prenatal testing, IVF, adoption—gives language for these conversations.

What the community consistently validates: the decision belongs to the people making it. Outside judgment, whether pushing toward or away from biological children, gets rejected. The parent with one affected and one unaffected child refuses obligatory regret. The adult child of an RP parent refuses to see their existence as regrettable.

The "RP Look" and Being Visible: Preparing Kids for Difference

One community thread addresses the "RP look"—the physical appearance of eyes with retinitis pigmentosa: characteristic bone spicule pigmentation, optic disc pallor, sometimes strabismus or nystagmus.

For family planning, this raises preparation questions. Children with RP may look visibly different. They may use mobility aids, optical devices, or service animals that draw attention. The community's willingness to discuss this openly—rather than treating appearance as shameful—suggests value in proactive social skills preparation.

Parents who choose biological children despite RP risk can draw on community wisdom about navigating schools, requesting accommodations, and building self-advocacy from early ages. The condition's visibility becomes manageable through preparation and community connection, not through hiding.

FAQ: Family Planning and RP

What are the actual odds my child will inherit RP?

Depends entirely on your specific mutation and inheritance pattern. Autosomal dominant RP means 50% risk per pregnancy. Autosomal recessive requires both parents to carry mutations. X-linked RP mostly affects males. You need comprehensive genetic testing for accurate numbers.

Can pregnancy testing detect RP?

Yes. Prenatal genetic testing through chorionic villus sampling (10-13 weeks) or amniocentesis (15-20 weeks) can detect known RP mutations in a fetus. This requires knowing the parental mutation first.

Does IVF guarantee a child without RP?

No. IVF with preimplantation genetic diagnosis (PGD) significantly reduces risk by testing embryos before implantation, but it's not foolproof. Testing errors happen, not all embryos may be unaffected, and you might need multiple cycles.

Is it selfish to have biological children if I have RP?

Community perspectives vary widely and reject single answers. Some emphasize that existence has value regardless of disability. Others prioritize preventing suffering through technology or alternative paths. The consensus: informed, intentional decision-making matters more than any specific outcome.

What treatments might exist for a future child with RP?

Current FDA-approved therapies target specific mutations (not all forms). Gene therapy, CRISPR trials, retinal prosthetics, and stem cell approaches continue developing. A child born with RP today may access treatments unimaginable now.